Good Morning,

Benjamin had an ok night...he's a little restless between the arm restraints and the big tube down his nose.  The surgeon just visited and said that we would give him 48 hrs (24 of which are now gone) to see if this somehow reverses itself.  Of course if he gets sicker they'll intervene sooner, but we'd all be very happy if he could get thru this without another operation.

Meanwhile Krissy didn't have a very good night.  Molly said she woke up around 3pm, yelling to open the door.  Molly put a note (and snack) under the door saying that she could get up when it was light out, so she stayed in til around 6 I think.  But then it was a pretty volatile morning.  I am really hoping that we can get her into the routine at school.  I think even though she doesn't want to go, getting into a structured routine will help her as much as anything and I also don't want to continue to reward her bad behavior with being able to have a free-for-all at home.  

I think she needs more prayer than Benjamin today, but thankfully we/you don't have to pick only one!  We really do believe that God hears our prayers...we've seen that over and over and we certainly are in a place of need on a variety of fronts.

I hope your week goes well.  I'd love to hear from you.  Jamie is now gone for the day and Benjamin won't talk to me, so your notes are appreciated :o)

Love Janelle

Hi again,

Sorry for the delay for those of you following a play by play of our current crisis.  We are fairly settled into a room on the surgical floor here at Doernbecher.  Benjamin is sleeping at the moment.  It's hard for him to get comfortable with the big tube down his nose and the arm restraints on that prevent him bending at the elbow.  If we were to  remove them, he'd have that tube pulled out very quickly.  My reflexes are pretty fast, having been primed extensively this week at home, but I will relax more without having to dive for the crib every time I see his hand twitch.

When we arrived in the room, the surgery resident came and again said that he didn't know if the attending surgeon was going to come in...he had told him that I requested it, but apparently the guy was non-commital.  So I told him that I was sorry that he was in the middle, but I was insisting that this guy come in tonight and look at him and I would be calling frequently to make sure that this happened.  I also suggested that he could call me if he would prefer, so we could talk about my concerns that way.   I really hate to get pushy, but when 'nice' doesn't work, we have to do what's best for the little boy, right?  Our nurse was completely supportive and so she decided to go and page the attending surgeon and he said "oh yeah, I'm coming up at 7:30".  So why didn't you just tell the other guy this several hours ago and save us all some time........

Anyway, in the mean time, I e-mailed the surgeon we trust most in Cincinnati, who almost always answers e-mail day or night, weekday or weekend, withiin 15 minutes...he was right on track tonight and ended up being reassuring that these obstructions do, sometimes resolve themselves with decompressing the bowel by using the tube down the nose.  He hated to create more scar tissue operating if there was a chance it might resolve, so with what they both said, I felt that it was reasonable for us to see what happens over the hours ahead. 

Meanwhile back at the ranch (or is it the funny farm?)  Kristin is finally down for the night.  She had a much better day, but was escalating by this evening.  When Larry went to put her to bed, he discovered that when she had chiseled some wood out of the door casing (this was apparently her early morning job today) she had actually cut thru one of the electirical wires and disabled the electronic lock on her door.  Bad combination...Mom in the hospital, Larry going to work, Krissy with a door that won't lock.  So, our neighbor Roger came over to make a strategic plan .  Our good friends Jim and Erin have been praying for us and in fact Jim had stopped by this morning and looked at Kristin's room.  He had noticed that she had bent an electrial cover part way off too, so when I called Erin about the door, she said Jim was already planning to come over to take care of that.  He graciously agreed to go shopping for Larry (who couldn't leave Kristin to go to the store and he definitely didn't want to take her with him as things had begun to deteriorate by this time)....then came and fixed both things.  I hear he got a glimpse into what we've been dealing with. I haven't actually heard the specifics but I think Krissy tried to snag a hammer from Jim .  She was not at all intimidated by an officer of the law, and took him on over it, no doubt envisioning how this could expidite her demolition project.  From what I hear, she's a sore loser.

We're so thankful for differnt ones that were willing to stay the night so Larry could go to work...Cindy (who had to leave for work at 5:30 am), Mom, Susan....but Molly ended up drawing the short straw.  Seriously we're so thankful that she was willing to do this.  She has college tomorrow, but thankfully it doesn't start until mid-morning, so Lord willing Krissy will sleep well (she certainly had a late start tonight)  Meanwhile, my dear friend Susan came and had gone shopping for Jamie and I, delivering all sorts of nutritious and non-nutritious items to keep us fed.  

Please pray especially for Molly as she will need to get Krissy up and ready for school tomorow.  Larry plans to drive her there when he gets home, dropping Jamie (who's here with me in the hospital overnight) off in time for her pre-calculus exam at Mt. Hood C.C.

I think that's about all I know for tonight.  I'll try and post in the morning as things become clearer where we're going to go with this.

Thanks for your continued prayers,

Janelle

2:10....just got back from xray. He's definitely got a bowel obstruction.  Surgeons are on the way.  He's happy at the moment, but the Dr. mentioned starting an IV and doing lab work, so that may change soon.  Continue praying...

janelle

I really didn't plan to write again today...however...  I am currently in the Emergency Dept. at Doernbecher with Benjamin.   When I posted earlier he wasn't up yet, so I was unaware that he was ill.  Our biggest concern is that he has a bowel obstruction since his symptoms are the same as when this happened in January.  I'll try and put a note up later when we have an official diagnosis, but would sure appreciate your prayers.  I am trying to look at the days ahead and see what I can get off the calendar...as I mentioned earlier this is David's dress rehearsal week up in Washougal (last bowel obstruction occurred during dress rehearsal for Narnia).  I also had an important meeting with the school district re. bus safety for Kristin on Tuesday as well as being scheduled to do an autism presentation for children's ministries at Good Shepherd Communicty Church that day, so pray that all details that need to work out will, and certainly that Kristin's day will continue to be fairly peaceful.  Larry worked all night and was still up helping get us packed and out the door about noon. Anne was a big help with Kris and Cindy is now there for the afternoon to care for her.  I got an honorable excused absence from the parent meeting at the theater as well as getting a last minute ride for David.  So now we take a deep breath and wait for his xray and try to avoid more germs here.  The doctor was repeatedly coughing when he was in here (get out already!). Jamie is here with me to help.

Thanks for praying~Love janelle

Good Morning,Well...we're all ok here. It's been a rough few days. You guys must be praying...she's doing pretty well so far this morning. Yesterday definitely started out better than Friday (still the winner for the "VERY BAD DAY" award) but deteriorated to the point of making it a close second.Larry was sleeping (or trying to) and the older girls were gone to rehearsal and to our friends house afterwards (I agreed to this since I didn't see how I could go and pick them up anyway). Thankfully Molly was here for about 8 hrs and she and I saw Kristin seeming to really benefit from 90 minutes or so in the pool. I was in with her and except for a few moments we don't need to go into here, she did pretty well (I wish there was longer benefit afterwards). We're not sure what all happened after we returned home that set her off, but by the time Cindy arrived for us to go to church, she was really a mess. Molly was to be off at 5:00 but offered to stay (it really takes a 2nd person (or even 3 or 4 at times) to try and keep everyone safe especially Benjamin who's a sitting duck). The two of them handled it well... Krissy was asleep and Benjamin was happy when we got home.  I sometimes feel like no one should have to deal with this degree of intensity, but God knows we can't do it without breaks I think....so He sent us Molly and Cindy...thanks...it was good to be at church.  We had a family pow wow and prayer time after dinner.  Anne spent time carefully wrapping up fragile things that might be spotted and Jamie told me I could call her if needed during the night.  

Thanks for continued prayer support...it's a busy week ahead.  We move into the theater this afternoon for High School Musical 2, David's show.  He has dress rehearsals every night this week and  11 shows starting Friday night.  Krissy has permission to attend dress rehearsal Thursday evening (Molly and I will wear our running shoes) but things will need to turn around some before wisdom would dictate us attempting that. 

Blessings to you all,

Janelle

You know how sometimes things seem bad, and then things get worse and you say "and I thought THAT was bad!"  I think we're probably in the middle of one of the worst days we've ever had with Kristin.  We got up very early as Larry heard ?? disturbing sounds coming from her room that caused him to think that it might be better to look sooner rather than later.  She had approxitmately 6 times more damage than what was previously done.  In fact huge sheets of FRP were pulled off the wall, lying over her bed and she was underneath them as though they were her blankets.  We really feel bad at the terrible waste this is of hard work and resources.  However we did all we could to tell them about her 'potential' and either that wasn't taken seriously enough and/or conveyed to the people doing the work.  We still believe that it would probably be best to just take off what's left and go with our original idea of putting up wood over the plywood.  The handyman is due to arrive (I hope he hasn't forgotten) sometime this afternoon (though it's nearly 4pm now).

Anyway...back to today, I am so thankful Larry is home.  Kris was really out of control and just unstrung, screaming, trying to get out, etc. etc.  It was all both of us could do to manage her.  I cancelled the bus and we both drove she and Jamie...first dropping off Jamie at Mt. Hood CC and then going to Krissy's school.  It was a special event day with a dance, karaoke, root beer floats, etc.  I thought I'd see if getting her into the classroom routine would help and I had already written to the teacher offering to come back this afternoon to help.  It didn't go well at all and as I told the staff "I really have my doubts that this is going to be successful".  It wasn't.  I decided pretty quickly that we couldn't leave her in that condition.  Her classroom staff is all so supportive and kind, we're very blessed to have her there....but today she needed to be at home.  There was alot of drama in the house for several hours...I don't even want to talk about it, but suffice it to say we were considering taking her to the hospital to have her admitted...it was, by anyone's standard, over the top.  I felt like if we could get her into the pool at the gym it would calm her, but Jamie had major reservations and told me she thought we should go for a drive instead.  So...we did.  We got her fries and white pop at the local drive thru and headed up the Columbia Gorge Scenic Hwy.  She was sleepy at first, cried quite abit (probably some drug reaction from something we'd given her earlier trying to calm her down) but all in all, she did seem to be pretty content.  We saw several waterfalls and it was a beautiful ride...I think it was therapeutic for Jamie and I too.  She really is better since we got home.  Please please pray for her (and us).  Most of you know we have tried some of the psychiatric medications with her in the past.  We haven't found one that hasn't had really negative side effects for her.  Even though the past few days and especially today have been difficult, Larry and I would both like to see if we can just get thru it, knowing she'll probably cycle out of this awful anxiety before long.  We just can't see drugging her 24/7 when she really has  2-3 months between these really hard times.  Thanks for your prayers for grace and strength and protection.  I worry about Ben getting caught in the flight path of flying toys....I took a particularly heavy airborne one to the knee cap today and I'd do it again in a second instead of him getting it in the head, but oh my, it hurt.   It's very hard to put away everything that can be thrown or broken.  

Benjamin is feeling punk still and I know it's just been 24 hrs. since we started medication...it takes 2-3 days at least for him to start to perk up.  All of the screaming is pretty hard on him too.

A dear friend who I previously planned to have lunch with today (but cancelled due to circumstances) called while we were on our drive and said she was bringing some dinner over.  So kind and another blessing for us today.  I'm so thankful if this had to happen that it was a day that Larry was home and awake.

More soon, no doubt.....love, janelle

Well, it's been a few days since I posted...it's not that things have been that quiet here.  We would appreciate your prayers.  Kristin is in one of her cycles again where she is particularly difficult and destructive.  You can tell she has alot of anxiety going on, though we aren't sure really of the reasons.  I think it's likely hormonal, in which case maybe she'll be better in a few days. I hope so.  A number of things have been broken the last few days including some further damage to her new room.  She's also been a problem on the bus.  On Monday the driver was quite upset.  Kris had not only tossed her backpack thru the air while the bus was moving, but Barney apparently connected with the driver's head when she threw him (Barney, not the driver) too.  I don't think she probably was intentionally trying to hit Kelley, more just that he was in the flight path.  I had a call this afternoon that she got out of control on the am bus today, screaming and trying to open the rear emergency door.  This bus has a 60 something year old driver with cancer.  I've been worried about both her and the afternoon driver, a very nice man, but definitely not someone who I believe has adequate trouble shooting skills to take Krissy on when it's a bad day.  Anyway, she again was agitated when it was time to come home, so her teacher decided to ride along with her to make sure she was safe.  Thank you Jorie....we really appreciate that.  We're hoping that the school district will see fit to put a chaperone on the bus with her routinely to insure her safety. 

Thanks too for remembering Benjamin.  He's been out of school over 3 weeks now, the last 2 he's been totally fine, but we have kept him out to let him get his immunity in place against H1N1.  Finally I was going to send him back on Wednesday...and then he just had a restless night on Tuesday, so I decided "I'll keep him home one more day".  By the end of the day he was gagging again and declining fluids...much the same as the illness that has recurred since August.  He's clearly sick, so I called our pediatrician's office right away this morning and thankfully even though our Dr. was out, his colleague agreed to phone out the antibiotic that's needed.  I found a nice pharmacy that was so accommodating in making it up so he's already had his first dose.  We're hopeful we can avoid a hospitalization again.  I also spoke with the GI department at Doernbecher and we're working on getting him scheduled for some testing to see if there is something that needs to be done to keep this from recurring so frequently. Poor little boy.

On a happier note, David passed his drivers license test this morning with a 90%, so he was pleased.  He's busy, both with college work and moving into the theater this weekend.  The show he's in opens a week from tomorrow night.

Ok...I think I'm tired now...Larry took an extra shift last night, so that means he just has one night off now before going back for 6 in a row.  

Hope you are well, staying well or getting well~ Love janelle